Dr Lapp will be speaking in Dunedin, Wellington, Hamilton, Napier and Nelson with a final lecture in Auckland on 6 April.

In an order to maximise Dr Lapp’s time and expertise, WellMe, after much negotiation, has been able to arrange for a lecture to first year Registrars which will form part of their Continuing Medical Education programme.

WellMe is very pleased with this outcome, believing it vital that doctors who will be treating our members in the future have a better understanding of ME/CFS and Fibromyalgia.

The lecture will take place on Thursday, 30 March. Although this is a closed meeting, WellMe has been able to invite selected medical professionals and researchers with expertise in ME/CFS and Fibromyalgia.

A recording of a Dr Lapp lecture will be made available to our members in due course.

1. Just Listen~ Don’t try to find a solution. Most likely someone who is ill has researched and already found the obvious treatments. They just need to be able to open up about their feelings without feeling like someone is judging them for feeling sad, angry or scared.

2. Just do it, don’t ask~ If you stop by and see there are dishes in the sink, of course it will help if you do them. Someone who is ill will appreciate that so much. It is little things like that, that are huge to a person that is sick. Stop by with an already made dinner, or offer to give their kids rides to school. Things like this help tremendously. Just don’t ask. People don’t want to feel like a burden and it is hard to swallow your pride and admit you need help.

3. Support their diet~ Sometimes to someone who isn’t sick, diets of those who are might seem extreme. Trust them that there are reasons for them to eat how they do. Remember it is hard for them too. I’m sure they would rather be eating a chocolate chip cookie then a salad with gluten free dressing, but certain foods triggers inflammatory responses or allergic reactions. So understand that they have certain dietary needs and support them.

4. Support their treatment~ This is another time when you just need to support, and not judge or try to give advice. When a person becomes chronically ill, they have ample time to research and learn about their disease. They will know all the treatments, join all the support groups and hear all the advice out there being given on there specific disease. When you see an ad in the back of some magazine that says, “(blah blah blah) cures this disease in six weeks, dont’ clip it out and give it to them. If it sounds to good to be true, it is. When you are chronically ill, it is because there is no cure. So all a person can do is try different treatments to find what works for them. There will be no easy answer and each person will respond differently to each treatment. Just because your cousin Jack got cured in five weeks from something doesn’t mean the next person will.

5. Don’t Invalidate~ When someone says they are in pain, they are in pain. It doesn’t matter that they “look” fine. There is no official face for pain. If they are moving slow, then let them take their time. Just because one day they had a “good” moment, doesn’t mean they are fine now. With chronic illness symptoms wax and wain. One day might not be as bad, or above baseline, and they might be able to work out in the garden for an hour. This does not mean that at the drop of a hat they can go out to eat or do the dishes. When you are ill you learn to take the moment at is comes or to live “five minutes at a time.” So try not to compare days or activites. The person is not faking. It is normal for a chronically ill person to have good times and bad times. Most likely their “good” times might land a normal person in the hospital, but they have learned to live around their symptoms and not panic anymore at certain aches and pain or strange neurological symptoms.

It seems that whether you have ME/CFS or Fibromyalgia that the symptoms are numerous. So numerous, in fact, that when we are asked to name them, we can’t remember them all. We , of course , have lots of pain, muscle weakness , muscle spasms, etc.

Many people think that this is all . Wow, if it were all, we would have it made. We then add in the memory loss, speech problems, acid reflux, IBS and the many other stomach issues. Then there’s, vertigo, off balance, dizziness, vision problems, itching and burning skin, yeast in various places, sleep disturbances of various kinds, night sweats, swollen lymph nodes, heart palpitations, brain fog, sensitivity to smells, chemicals, medications, noise, light, extreme heat and cold and sheer exhaustion beyond words. Oh and lets not forget, anxiety , depression, fearfulness and panic.

My point is that of all the illnesses that exist, we have some of the most complex symptoms of any. Yet, with all of our many symptoms , are not taken seriously. Who would have all of these things wrong and not be very sick ? No one ! I’m sure there are many that I’ve forgotten because I have memory loss. lol !! No wonder when we go to the doctor we can’t remember what all to discuss. I will make a list and still manage to forget something on my list.

Let’s face it. There is no way than anyone, other than another person who is surviving these monsters inside, can understand. We could tell them over and over and the explanation does not do justice to all that we endure. I am in awe of each of you . You suffer , yet you and reach out to others with compassion. Such bravery , I’ve never seen before.

So , we move ever forward, using every tool we can to help us in whatever way it can. Take these words and carry them with you . Say them over and over. ” I am enduring a nightmare and I am surviving it with grace. I must be kind to myself and love who I am”.

As we face our chronic illness day after day, we begin to associate ourselves with our illness. We define who we are by what we can or can not do. Many times, we lose our self-esteem by adapting to the belief that our worth is somehow connected to how we contribute.

We are not our illness. Our limitations are just that – limitations. We allow other people, and even society, to define us or impose their ideas of self-worth on us.

So many times we forget that it’s important to love ourselves first. We’re burdened by guilt, with thinking we need to be doing more or being more to friends and family. This guilt can send us into a tailspin, only adding to our limitations.

We must learn, one tiny step at a time, to care for ourselves in order to be effective, in this same way, to others in our life.

I challenge you to reexamine yourself and find the area of your life in which you’re applying these things and take back the power from this kind of stinking thinking.

We are ill, yet we are important, vital human beings and deserve the same respect as we give to anyone else.

You are kind, generous, caring, understanding and beautiful. This illness is not of your own making and is not who you are, just where you are.

Reprogram your thinking. Learn to love the person that you are and this change will bring you a much deserved peace of mind.

Terminology and Meanings in ME

Terminology used in the [ability] scales [but which is very useful to anyone new to ME or to anyone trying to *explain* ME to others]

Resting: Resting means completely different things at different severity levels of illness. For the mildly ill, resting may be watching TV or sitting in a chair while reading a book or having a quiet visit with friends. For the severely ill, these activities are not at all restful and indeed would provoke severe relapses.

For the very severely ill, resting means lying down in a dark room in silence and with no sensory input at all (TV, radio or light) with zero physical movement or cognitive activity. Clothing must also be comfortable and the room must have a very moderate temperature; not too hot or too cold. When referring to resting, a better term for the very severely ill would be ‘complete incapacitation.” The term ‘resting’ implies that inactivity is optional; the severely ill are often ‘resting’ (i.e. incapacitated) because it is physically impossible for them to do anything else.

For moderately ill patients, resting lies somewhere between the above two extremes.

Resting will change according to the severity of the level of each individual.

The very severely ill have no symptom-free or safe activity limit. Concepts of pacing or of keeping activity at a level which does not cause immediate or delayed symptoms are useless. Indeed, a sizeable proportion of the very severely ill may well be so severely affected in the first place because of over-exertion in the early stages of their illness; they did not know the importance of rest, and in some cases, were not allowed to rest adequately; extremely common in M.E., this is a tragedy and an absolute disgrace.

Severe M.E. restricts life to a degree that healthy people might find hard to imagine, but patients have learned from bitter experience all about the extreme negative consequences of over-exertion. They are reminded on a weekly or even daily basis that even with careful control, limits can be misjudged or tasks can take a greater toll than expected. An M.E. patient can never be accused of being too restrictive of his activity levels; he wants to live and experience life as much as possible and has learned to use enormous discipline to avoid over-exertion.

I have never heard of anyone with M.E. who is too restrictive with their activity levels; the problem is always the opposite, if anything. It is a natural human desire to “keep going” when there are chores waiting to be completed, and for most patients, when there is a moment of feeling somewhat more ‘well,’ it is often less difficult to physically keep pushing themselves (even to the point of severely worsening the illness) than it is to force themselves to adequately rest. In the earlier stages of the disease (when pushing ones self for short periods is more possible) the patient also very often finds it is easier emotionally to forge ahead in physical over-exertion and suffer the dire consequences rather than stand up to extreme pressure from friends, family and medical staff for these activities to be completed at the same level as in pre-illness..

Resting endlessly for many years is much harder than one can imagine. In comparing M.E. patients to those who have suffered from strokes, it has been stated the less difficult task was learning to walk and talk again over forcing one’s self to rest endlessly and have no distraction from the extreme pain.

People with M.E. would give anything to be able to work hard to improve their illness, and to be improving every day instead of staying the same or getting worse. The problem of M.E. patients under–reporting orunder–estimating their ability levels just does not exist.

This is not about patients being as inactive as possible. A person with moderate M.E. of course does not need to live with the same restrictions as does someone with severe M.E. The point here is just that patients must stay within their individual post-illness limits. No more and no less than that is necessary.

Increasing the activity levels of someone with M.E. beyond their individual limits can only be harmful. Gradually increasing activity does not make any exercise easier or less damaging; it does not matter how slow it is done: it has the same harmful effects.

Overexertion: What characterises M.E. every bit as much as the individual symptoms is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on.

The main characteristics of the pattern of symptom exacerbations, relapses and disease progression etc. in M.E. include:

People with M.E. are unable to maintain their pre-illness activity levels. This is an acute (sudden) change. M.E. patients can only achieve 50%, or less, of their pre-illness activity levels.

People with M.E. are limited in how physically active they can be but are also limited in similar way with; cognitive exertion, sensory input and orthostatic stress.

When a person with M.E. is active beyond their individual (physical, cognitive, sensory or orthostatic) limits this causes a worsening of various neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms.

The level of physical activity, cognitive exertion, sensory input or orthostatic stress that is needed to cause a significant or severe worsening of symptoms varies from patient to patient, but is often trivial compared to a patient’s pre-illness tolerances and abilities.

The severity of M.E. waxes and wanes throughout the hour/day/week and month.

The worsening of the illness caused by overexertion often does not peak until 24 – 72 hours (or more) later.

The effects of overexertion can accumulate over longer periods of time and lead to disease progression, or death.

The activity limits of M.E. are not short term; an increase in activity levels beyond a patient’s individual limits, even if gradual, can only cause relapse, disease progression or death.

The symptoms of M.E. do not resolve with rest. The symptoms and disability of M.E. are not caused only by overexertion; there is also a base level of illness which can be quite severe even at rest.

Repeated overexertion can harm the patient’s chances for future improvement in M.E. Patients who are able to avoid overexertion have repeatedly been shown to have the most positive long-term prognosis.

Not every M.E. sufferer has ‘safe’ activity limits within which they will not exacerbate their illness; this is not the case for very severely affected patients.

Cognitive abilities: When rating cognitive abilities it is the persons intellectual capabilities which are being referred to, not their state of mental or emotional health which may or may not be at quite a different level altogether.

Symptom severity and variety: The pain and suffering of M.E. has a number of different ‘flavours.’ The experience can be made up of severe nausea, vertigo and disequilibrium, cold and hot fevers or feeling both very cold and very hot at the same time, feeling ‘poisoned’ and very ill, pain in the glands and throat, muscle pain, twitching and uncontrollable spasms, difficulty breathing and breathlessness, cardiac pain and pressure and dysfunction that feels like a heart attack, a feeling of having a heart attack in every organ (caused by lack of blood flow to these organs), sensations of pain and terrible pressure in the brain and behind the eyes, stroke-like or coma-like episodes, abdominal pain and pain/discomfort following meals, seizures and ‘sensory storms’ (while conscious) and, lastly, an inability to remain conscious for more than a few minutes, or hours at a time or for more than a few hours each day in total. Any one of these problems can cause severe suffering. What makes severe M.E. so terrible is that the patient is almost always dealing with a large number of these horrific problems all at once.

Often when we’re at the doctor’s office or other important (like really important!) medical appointments, the overwhelming feelings of travelling, noise, lights, the exhaustion, the anxiety can all become too much, and if you’re like me, then your brain might just completely implode at that moment and you’re completely unable to express how your illness is affecting YOU.

This is part 3 in a series of 3 in how you can explain your illness to your doctor by using an ability scale.

Part 3. Symptom severity scale

Mild Symptoms = 1 to 3. Symptoms present but at so low a level one can forget they are there most of the time.

Mild/moderate symptoms = 4 to 5

Moderate symptoms = 6 to 7

Very Severe Symptoms = 8

Severe Symptoms = 9

Extremely severe symptoms = 10. Totally non-functional and also possibly crying out or moaning uncontrollably and/or being near delirium. Completely overwhelmed with pain and suffering. The face muscles may be slack, the body partly or completely paralysed, and thinking or communicating may be impossible. As far as the patient is concerned, being eaten alive by a tiger could not hurt any more, or feel any worse. Absolute agony.

FULLY RECOVERED

0/10

No symptoms.

VIRTUALLY RECOVERED

1/10

No symptoms at rest. Mild symptoms on occasion following strenuous physical or mental activity but recovery is complete by the next day.

MILDLY AFFECTED

2/10

Mild symptoms (1 to 3) for several hours or days following strenuous physical or mental activity.

3/10

Mild symptoms (1 to 3) at rest, worsened to mild/moderate (4 or 5) for several hours or days following strenuous physical or mental activity beyond the person’s limits.

MODERATELY AFFECTED

4/10

Mild – mild/moderate symptoms (1 to 5) at rest, worsened to moderate (6 or 7) for several hours or days following physical or mental activity beyond the person’s limits.

5/10

Mild/moderate symptoms (4 or 5) at rest, consisting of mild/moderate pain and/or sensations of illness/dysfunction throughout the body and brain for some parts of the day, with increasing moderate symptoms (6 or 7) for several hours, days or weeks (or longer) following physical or mental activity beyond the person’s limits.

MODERATELY TO SEVERELY AFFECTED

6/10

Moderate symptoms (6 or 7) at rest with moderate pain and/or sensations of illness/dysfunction throughout the body and brain for significant periods of the day; increasing moderate (and occasionally severe – level 8) symptoms for several hours, days or weeks or months (or longer) following physical or mental activity beyond the persons limits.

7/10

Moderate (6 or 7) and occasionally severe (8) symptoms at rest. There is moderate pain (6 or 7) and/or sensations of illness/dysfunction throughout the body and brain for significant periods of the day, increasing to moderate and sometimes severe symptoms for several hours, days, weeks or months (or longer) afterward.

SEVERELY AFFECTED

8/10

Moderate to severe symptoms (6–8) at rest. There is moderate to severe pain (6–8) and/or sensations of illness/dysfunction throughout the body and brain for much of the day. Symptoms are severe (8) following any physical or mental activity with a recovery period as low as hours, or as long as days to months, or longer. It is all the person can do to just get through one day at a time.

8.5/10

Severe symptoms (8) at rest and following even trivial physical or mental activity with a recovery period of hours or days, or as much as several weeks or months or longer. There is severe pain (8) and/or overwhelming sensations of illness/dysfunction throughout the body and brain for all but a few hours of the day. In some patients only small amounts of stimuli can be tolerated, and only for short periods of time. It is all the person can do to just get through the day a few hours at a time.

VERY SEVERELY AFFECTED

9/10

There is severe pain (8) and/or overwhelming sensations of illness/dysfunction throughout the body and brain for all but a few short periods in the day, increasing to severe or very severe symptoms (8 or 9) following even trivial physical or mental activity with a recovery period of hours days, weeks, months or longer. In some patients only small amounts of stimuli can be tolerated for short periods. It is all the person can do to just get through the day one hour at a time.

9.5/10

There is severe pain (8) and/or overwhelming sensations of illness/dysfunction throughout the body and brain almost continually, worsening to very severe (9) or extremely severe (10) following even trivial physical or mental activity with a recovery period of hours, days, weeks or months or longer. In some patients any type of stimulus is intolerable; even very low levels of light, noise, movement or motion are excruciating for more than very short periods. The smallest physical movements bring extreme exacerbations in symptoms. Intellectual activity is similarly affected. It is all the person can do to just get through the day one minute at a time.

PROFOUNDLY SEVERELY AFFECTED

10/10

There is very severe (9) pain and/or overwhelming sensations of illness/dysfunction throughout the body and brain continually, worsening to extremely severe (10) by even trivial physical or mental activity with a recovery period of hours, days, several weeks or months or longer. In some patients any type of stimulus is intolerable; even very short/low exposures to light, noise, movement and motion are excruciating and may require a long recovery period. The smallest physical movement brings intense exacerbations in symptoms. Mental activity is similarly affected. It is all the person can do to just get through the day one minute or one second at a time.